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1 Florida Viral Hepatitis Council Meeting July 17-18, 2007 Lifelink Healthcare Center, Tampa Council Members

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1 Florida Viral Hepatitis Council Meeting July 17-18, 2007 Lifelink Healthcare Center, Tampa Council Members Florida Viral Hepatitis Council meeting July 17-18, 2007 LifeLink HealthCare Center, Tampa Council members: Debbie Barnes Dr. Chen Dr. Johanson Deborah Orr Bob Keane Michael Amidei Cindy McLaughlin Jennifer Bourgeois Chester Grabowski Maureen Merckle Mike Jolly Guests: Nosipho Beaufort Lucretia Jones April Crowley Phil Reichert Kathy Cavanaugh (GSK) Marc Konechy (Valeant) Peggy St. Croix (Roche July 17, 2007 Michael Amidei proposed provisional approval of the minutes for the last meeting. Seconded. Minutes were provisionally approved by the council. Phil Reichert attended the Patient Care Planning Group (PCPG) meeting last week and presented on the Florida Viral Hepatitis Council (VHC) and the Hepatitis Prevention Program (HPP). The leaders of the three planning groups (VHC, Prevention Planning Group (PPG), PCPG) should meet annually. Meghan Boyter is the liaison for all three groups. HPP staff try to attend all the meeting as part of goal to integrate hepatitis into other programs. Reichert attended the Hepatitis Foundation national meeting in early June to see if it would be useful to bring some of those speakers to Florida. Dr. Melissa Palmer presented at the conference – good presentation with a lot of slides and a lot of discussion of Hepatitis B treatment and management. Debbie Barnes stated that talks are in progress with Valeant to get Dr. Palmer as keynote speaker for the next statewide conference. The Hepatitis Foundation meeting also had parents of children with hepatitis B (children adopted from China or children of immigrants, primarily) and discussed changes in testing. Also discussions about how to treat non-responders. Lack of understanding of universal precautions – reluctance among doctors to treat people with hepatitis who have not disclosed. One of the co-founders of the Hepatitis B foundation said they expect five (5) new drugs on the market for hepatitis B (HBV). 1 Drugs focus on attacking certain points of the HBV life cycle (similar to modern HIV/AIDS drugs). The hepatitis virus can survive outside of the body for two weeks and is still infectious. 80% of all liver cancer in the world is caused by HBV, and HBV is very underreported. Chester Grabowski was at a meeting in DC last week and people report that local doctors within ethnic groups are sitting on large pools of HBV patients and not treating them based on old guidelines that didn’t advise aggressive treatment if ALTs are normal and they appear healthy. Are also using old data and drug treatment guidelines. Hepatitis B foundation will be publishing a paper in the Journal of Viral Hepatitis re: improving hepatitis surveillance. Discussion of Title I and II and care consortiums Hepatitis Program legislative budget request (LBR) – have asked for $4 million dollars every year to provide enhanced testing for hepatitis C patients. Has never gotten out of Florida Department of Health (DOH). Planning on meeting with Surgeon General Dr. Viamonte-Ros to discuss the program and present its needs. Funding issues – working on a Centers for Disease Control and Prevention (CDC) grant. CDC gave $68K towards hepatitis C coordinator. This year, there will be a hepatitis specific grant. Can apply for 5K – 150K. Grant application is due August 31, 2007. Built in $10K to support an educational conference next year. The 317 program had an overlap of money with extra funding ($400K) for hepatitis B vaccine (FL received $2.5 million total). 317 vaccine is being used in STD clinics for at risk patients. CDC may make 317 money ($) available next year. In the process of reducing the budget by 10% ($300K). Can’t touch the money that goes to the 15 funded counties for this year. If there is an additional reduction next year, may have to cut some counties. Will have to reduce vaccine $ and lab $ for this year – doesn’t leave much for subsequent cuts. Risk assessments – Andi Thomas developed a universal risk assessment form last year. Every program uses a different risk assessment form. 1628 form is used for HIV/AIDS. Had a hepatitis section added to the 1628 form. Ten counties will continue to use the separate hepatitis risk assessment form. Ultimate goal is to reduce the amount of paperwork for county health departments. Phil distributed copies of the new 1628, Thomas’s form and the hepatitis risk assessment form. Dr. Viamonte-Ros sent out email regarding reducing travel and monitoring purchases. Suspended all special pay increases and review all contracts for possible reductions. All programs have been asked to look at their budgets and remove 10%. Reichert distributed a copy of Public Health Reports – there is an article on Florida’s hepatitis integration efforts. 2 At the last meeting, discussed goals, objectives, and unmet needs. Were able to fund two more health departments (Orange and Duval). The hepatitis hotline was funded until a few years ago – no longer exists. Able to use that money for other things, such as hepatitis C home test kits. Would like to break up into workgroups and write position papers. Comprehensive plan discussion: Would like to break up into three groups to come up with action steps under the objectives. CDC cooperative agreement asks that you develop a plan and/or maintain a plan. Reichert distributed copies of the new draft of the comprehensive plan. Group 1 does Goal 1-2, Group 2 – Goal 3-4, Group 3 – Goal 5-6. Idenix project ended last week – no longer viable. FHVC openings, nominations, openings, and bylaws; educational materials – April Crowley Reviewed changes to the bylaws that were suggested at the last meeting. 18 out of the 20 positions are filled. Need at least 4 community members – right now only have 1 community member. Have people who are on the council that are representing CBOs (although they are infected also). Do we want 4 people from the community just as consumers? There is a problem getting people because some community members may not want to disclose in order to get time off from work and some people may not be able to afford the trip. Some people can overlap in roles – but want to make sure that the Council is inclusive. Need two academic/research people (only 1 now). Shift Chester Grabowski and Mike Jolly from medical section to academic/research. No one representing the Veterans Administration (VA) – need to recruit someone. Michael Amidei has someone from the VA who is interested in joining the Council. Dr. Bridget Morgan at James Hailey VA in Tampa. Also, need to represent people from across the state. The group meets in Tampa because ALF is here, but need to get Council members from outside of Tampa as well. Anyone can nominate anyone, but have been appointing people too often. Need to go back to nominating and voting on new council members. Council has agreed to doing nominating and voting on new members on a quarterly basis. April could do a statewide press release about the Council and announcing availability for nominations, directing them to a website. Would also 3 increase the number of guests. After some discussion, it was decided that a press release is not a good idea for this particular venue. Michael Amidei – if you invite people then set up a slate of people to vote on who may not be selected. Need to do something for people who are not elected to allow them to participate in the council. Debbie Barnes– also have rules about missing meetings to remove people from the council. If we open up to more guests – need to have rules and restrictions for guests. Also need to restrict our interactions with pharmaceuticals companies and they should not be included in meeting business Chester Grabowski motioned to add the following to the bylaws any conversations specific to developing ideas and discussing topics related to the Council be limited to the voting members of the Council only. Welcome guests in an observation position for the consultation of the Council) Mike Jolly supports Mr. Grabowski – felt that they should not have been involved in the conversation because there was a change in the conversation. There are ways to have them in the room without having them actively involved in the conversation. Peggy St. Croix – was at a meeting where a person said that the drug companies pay the FDA. Had to speak up to clarify the process. Drug companies are getting bad press right now. Jolly – publicity is justified because of shady practices. Debbie Barnes and Cindy McLaughlin– corporate entities should not be involved in those discussions. Amidei called the question. Council voted to support the motion. Amend the motion to state “voting members, including the Co-chairs and facilitator” Council unanimously voted to amend the motion. Note: We follow Roberts Rules of Order, and as part of that, the co-chairs and/or facilitator need to recognize guests who wish to speak. Discussion of who should be the back up for the Co-chairs of the Council. Who should be the backup if Phil Reichert is absent from the meeting? Don’t need to set up a back up because the Council can vote. Michael Amidei voted to accept the by laws, Grabowski seconded. Council voted unanimously to pass. 4 Educational Materials: A new hepatitis C brochure from ETR is now available in both English and Spanish. Contact April Crowley if you would like to receive them. There is room on the brochures to add local contact information. In the process of revising the ABC viral hepatitis charts to make them more consumer friendly. The CDC educational material website is up again and materials can be requested from them. Break for lunch. Will reconvene at 12:45.
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